ISSUE 2 SPRING 2014 VOLUME 1

IN THIS ISSUE:

RCEAC, NCS GOES MOBILE, STAFF

SPOTLIGHT .................... …………………….….2 COMMUNITY OUTREACH, AUTISM AWARENESS

MONTH……………………………………………..3 CALENDAR OF EVENTS, AND THE COMMUNITY

WANTS TO KNOW…………………………….....4

South Region Your Child. Your Community. Your Country. Children Everywhere.

The National Children’s Study Reaches Milestone

T he National Children’s Study (NCS)

South Region Team is pleased that

so many participants are continuing

to take part in the Study across our

10 Study Locations (SLs). Once we get in

touch with all participants in the region, we

hope that every participant who originally

signed up for the Study stays in the Study. Our

data collection team has been working hard for

the past 15 months to find and speak with

every NCS family. The fact that most

participants decided to continue in the Study

shows their commitment to improving

children’s health and well-being for

generations to come.

The NCS South Region Team could have not

reached this goal without the help of

community partners who continue to support

the Study. We would like to thank everyone

who invited us to speak at their organization or

attended a community event during the past

year. Thank you to those who displayed our

flyers, attended events, signed up to receive

this newsletter, and helped spread the word

about the NCS in your communities. There is

more to come! We are excited about many

upcoming community events. To learn more

about these events, please read the

“Community Outreach and Engagement”

section on page 3.

We hinted in our Fall 2013 newsletter that the

NCS South Region was about to introduce

something big in 2014. In this issue, we are

proud to announce the arrival of our NCS

South Region Data Collection Mobile Units.

While three SLs have a centrally located field

office, participants in other SLs often cannot

easily travel to an office to complete a Study

visit. For these locations, we are introducing

“mobile units” – a complete office in a van

capable of traveling to a location closer to

participants’ homes. To find out if your

location is getting a mobile unit, a field office

or both, please read the “NCS Goes Mobile”

section on page 2.

Another piece of exciting news is the

development of the first iPad application for

the NCS by the South Region Team. The

section below briefly discusses the latest

progress on this front. We hope you find this

newsletter helpful and look forward to working

with many of you in the year ahead.

Richard C. Gershon, PhD

Co-Principal Investigator, NCS South Region

Vice Chair for Research, Associate Professor

Medical Social Sciences and Preventive

Medicine-Health and Biomedical Informatics

Northwestern University

iPad Applications Measure Early Cognition and are Fun for Kids!

I n January 2014, the NCS South Region Team completed the first version of four new iPad

applications (apps). These apps will be used by the NCS to measure cognition (the ability to

process thoughts) in young children. While using the iPad apps, children are asked to find

and touch shapes, pictures and colors on the iPad screen. The apps measure if children can

sort pictures, recognize patterns, and identify words with pictures. Using these apps over a few

years will allow the NCS to observe children’s cognition as they grow. This is an important part of

children’s health and development. The national NCS team is currently reviewing the first version. This

app should be in the field later this year.

Source: http://flic.kr/ps/Q7Hav

The NCS South Region is leading a team of

researchers who are developing iPad based

tests of everything from vocabulary to vision,

for both children and their parents.

Autism Awareness

2

The NCS South Region would like to welcome three new members to the RCEAC: Nicole

Ortega from Bexar County, TX, Dr. Juan Olivares from Harris County, TX and Barbara

LeBlanc from Orleans Parish, LA.

Local Leadership is Key to Effective Community Engagement

Miguelina Benitez joined the NCS

South Region Team in 2013 and

currently works with 70 participants.

Miguelina is from the Dominican

Republic and speaks both English

and Spanish. Previously, Miguelina

helped adult and child survivors of

domestic and sexual violence. She

has research experience at Westat,

Mathematics Policy Research, and

the Centers for Disease Control

(CDC). At the CDC she worked on a

study titled Preventing Violence

during Pregnancy. Miguelina

continues her volunteer work

helping women and children in

crisis.

T he Regional Community Engagement

Advisory Committee (RCEAC) is an

important part of the NCS. Each person

that serves on this committee brings a

unique leadership quality that connects the Study to

communities and provides important support. Over the

last few months, the Communications Team has relied

on members of the RCEAC for planning and holding

community events. Community events increase

awareness of the Study and encourage participants to

stay in the NCS.

A special thanks goes to Kerry Dunlavey, RN in

Baker County, FL who helped us organize and hold

the first “NCS Mobile Unit Open House,” and to Judie

Forte-Huff in Lamar County, TX for her work with

our “Be a Healthy Superhero” coloring contest. Ms.

Huff helped organize the participation of children in

four schools in the Paris Independent School District.

The success of both projects could not have been

realized without RCEAC support. The

Communications Team has many upcoming events in

2014 and will be reaching out to RCEAC members in

other Study Locations their help and support. We are

thankful to the RCEAC for their continued

commitment.

The NCS Goes Mobile The NCS South Region Team is using vans to serve as

mobile offices for participants when they have an in-

person Study visit. These fully equipped vans are very

unique and will bring a comfortable and convenient

data collection experience to where participants live,

work and play. We have both large

and small van models. Both models

were designed with NCS

participants in mind.

The larger van is the Sprinter 2500.

This van will be used in Study

Locations that do not have a field

office. This van provides a quiet

environment that is free from

distractions for holding interviews.

There is an area to sit comfortably

during the visit as well as a

bathroom. The Sprinter van also has

an area for taking body

measurements like height, weight

and blood pressure and for

collecting biological specimens

such as blood or urine. Field data

collectors have enough room to process and prepare

specimens for shipment. The van has freezers and

refrigerators for storage of specimens and samples and

is secure with a modern locking system. The Sprinter

2500 van will be used in Baker County, FL, Benton

County, AR, Davidson County, TN, Valencia County,

NM, and Bexar and Harris Counties, TX.

The second, smaller van is a Ford Transit. This van has

the same freezers and refrigerators for storing

specimens and samples as the larger model. The Ford

Transit van will be used in Study Locations that have

field offices where participants can come for

appointments, except Orleans

Parish, which does not have an

office. Orleans Parish has a smaller

number of participants and the

smaller van will help our data

collector stay better connected. The

other locations that will be receiving

this van model are Baldwin County,

GA, Hinds County, MS and Lamar

County, TX.

The data collection mobile units will

be arriving at their Study Locations

over the next few months. The first

van arrived in Baker County, FL,

where a “Mobile Unit Open House”

was held on January 13, 2014. It

was a huge success! Participants,

the media and the community were

invited. As part of the open house, the NCS South

Region Team presented a Study update to the Healthy

Baker coalition. A crowd of approximately 30 people

stayed after the presentation and our two local data

collectors led tours of the Sprinter 2500 van. Check out

your Study Location Facebook page to learn where our

NCS mobile units are headed next.

STAFF SPOTLIGHT

Field data collectors are important

members of the NCS South Region

Team. They are the “face of the

Study” to participant families and

community members. We would

like to introduce our four NCS

South Region data collectors from

Harris County, TX. They have been

successfully building trust and

positive relationships with

participants.

Miguelina Benitez, BA

Prior to joining the NCS South

Region Team in August 2013, Janet

Gaetje worked as a social worker

and, more recently, as a data

collector for the NCS Harris County

Study Center. Janet enjoys volunteer

work with animals and giving her

time at her local church gathering

books and clothing for needy

families. She has been married for 8

years and has a 4 year old daughter.

Janet Gaetje, BA

Baker County Data Collectors, Shelly

Crawford and Lori Hodges, showing

the new Sprinter 2500 van.

Watch an interview with RCEAC member,

Zonzie McLaurin, on the Hinds County

Facebook Page: facebook.com/NCSHindsCo.

3

April — National Autism Awareness Month

Community Outreach

A s you know, the NCS

is interested in

learning more about

many childhood

conditions, including autism.

Autism is not a single condition

but usually refers to a number of

disorders said to be on an “autism

spectrum.” Autism is estimated to

affect 1 out of every 68 children in

the United States. Boys are four

times more likely to be on the

autism spectrum. Children with

autism often have difficulties in

social situations and with

communication. They also can

repeat certain behaviors over and

over again.

Autism is a complex

neurodevelopmental disorder.

Ongoing research continues to look

for the causes. Although no single

cause has been identified, scientists

have discovered a number of genes

associated with autism. Most of

these genes are not sufficient to

cause autism alone, which makes

experts believe other factors such

as environment and early brain

development play a role.

There is no cure for autism,

however, therapies and behavioral

interventions which target specific

symptoms can provide much help.

Significant improvements in

autism symptoms are most often

seen when children get intensive

help early on. Most healthcare

providers agree that the earlier a

child is diagnosed and begins

treatment, the better. Once

diagnosed, children, parents and

healthcare providers can make an

individualized plan to address each

child’s specific needs.

A few early symptoms that require

evaluation by an expert include:

No babbling or pointing by

age one

No single words by 16

months or two word phrases

by age two

Poor eye contact

Autism is a serious condition

which affects the individual

throughout their lifetime.

Research is needed to continue to

understand and find causes as well

as design and improve treatments

for those who have autism.

D uring the past few months, the South

Region Communications, Community

Outreach and Engagement Team (CCOE)

has been hard at work across the south

region. In January 2014, the CCOE Team participated

in the Healthy Baker Coalition meeting in Baker

County, FL which was followed by our first Data

Collection Mobile Unit Open House. Baker County is

the first location in the south region to get an NCS Data

Collection Mobile Unit. Baker County data collectors

led tours of the van, highlighting all the features that

will make Study visits more convenient for families.

For the past several months, we worked with the Paris

Independent School District in Lamar County, TX for

the “Be a Healthy Superhero” calendar coloring contest.

The contest was created to celebrate the Lamar County

families currently taking part in the NCS. These NCS

families are making a difference in children’s health,

making them “Healthy Superheroes” to all children.

Hundreds of local children aged Pre-K to 5th grade

turned in drawings of healthy superheroes. Thirty-nine

drawings were chosen for the 2014 calendar. In

February, each school received a gift card for art

supplies, a certificate for the principal, and certificates

for each calendar winner. Copies of the calendars were

given to the local Parent Teacher Associations as

fundraisers in each of the four schools.

Building relationships with participants and community leaders

Baker County, FL community member signs up to

receive the NCS South Region newsletter via email.

Presentation of certificates at Givens Elementary

School in Lamar County, TX.

STAFF SPOTLIGHT

Melia J. Wichmann, BA

Denita Roberson, BS

Denita graduated from Sam Houston

State University where she studied

Health and Biology with an

emphasis on Pre-Medicine. Before

joining the NCS, she worked as a

Behavioral Therapist for individuals

with autism and other developmental

disabilities. Denita is happy to be a

part of research that may provide

information about different types of

childhood diseases. She also enjoys

music and the arts.

Melia is a graduate of Texas A&M

University and worked for the

University of Texas MD Anderson

Cancer Center as an administrative

assistant to more than 40 statistical

analysts. She was responsible for

assigning research studies for

statistical review. She joined the

NCS Vanguard Study through the

Baylor College of Medicine in

Houston, TX in August 2012. Melia

has been married for 32 years and

has one son.

RECENT EVENTS

March 15: Orleans Parish, LA

EarthFest at the Audubon Zoo

April 1: Baldwin County, GA Field

Office Open House

April 3: Davidson County, TN

Incredible Baby Shower at the TSU

Gentry Center

April 17: Valencia County, NM Los

Lunas Health and Wellness Fair

4

May 2014

Sun Mon Tue Wed Thu Fri Sat

1 Spring Into Street Food,

Local Food Truck Event,

11am-2pm, Deaderick St.

between 3rd and 5th

Avenue North

2

3 Relay for Life Nashville,

Cumberland Park (East

Bank Cumberland River),

FREE admission for

festival/activities

Sevier Park Fest 10am-

8pm, FREE to attend,

"Festival Friend" tickets

available for purchase

4 Lyle the Crocodile at Nashville's Children's Theatre, 2pm Child $14,

Adult $20, THRU May 11

5

6 Live Music at Layla's

Bluegrass Inn, Nashville

7 GJCC May Art Exhibit, FREE Admission, Gordon Jewish Community Center,

7pm-9pm

8 Bellevue Community Chorus Rehearsals, 7-8:30pm, Bellevue Church

of Christ, $10

9 Frist Center, FREE for college students with ID and for visitors 18 and younger, Friday 5:00pm-

9:00pm

10 Crossings Farmers Market, 8am - Noon, 5320 Hickory Hollow Pkway (2nd and 4th

Saturdays)

11 Mother’s Day 12

13 Mayor's Art Show, Frist Center for Visual Arts,

10am-5:30pm

14 May "Bone-A-Fied" Family Science Event, 2pm for 3rd-8th graders, Adventure

Science Center

15 Spring Into Street Food, Local Food Truck Event, 11am-2pm, Deaderick St. between 3rd and 5th Ave.

North

16 Madagascar 2 Showing at the Nashville Zoo, 6-

9:30pm

17

18 Beginner Friendly Urban Ride (B-cycle), 12:00pm, Music Row Roundabout B-

Station, Free to the public

19

20

21

22 Bellevue Community Chorus Rehearsals, 7-8:30pm, Bellevue Church

of Christ, $10

23 Frist Center, FREE for college students with ID and for visitors 18 and younger, Friday 5:00pm-

9:00pm

24 Zoofari Slumber, Overnight Event for children ages 4-12, Nashville Zoo at Grassmere, May 24-25,

Registration Required,

25 Oklahoma! at the Keeton Theatre, Registration

Required, 2:00pm

26 27 Sand Volleyball offered by Team Green Adventures, 6:00pm at Centennial Park,

FREE

28 29 Spring Into Street Food, Local Food Truck Event, 11am-2pm, Deaderick St. between 3rd and 5th Ave.

North

30 Frist Center, FREE for college students with ID and for visitors 18 and younger, Friday 5:00pm-

9:00pm

31

Your Child. Your Community. Your Country. Children Everywhere.

Remind me of Study goals. What is the NCS all

about and what do you hope to learn from my

involvement? Participating in the NCS is a unique opportunity to be a part of a

nationwide health effort. The National Children’s Study (NCS) is

the largest long-term children’s health study ever conducted in the

US with the goal of learning more about children’s health. The

NCS follows children from birth or before birth to 21 years of age. The NCS will look at important health issues to see if there are

links between children’s environments and their health. By

studying children’s development from pregnancy through infancy,

childhood, and into early adulthood, the Study hopes to further

understanding of what makes children healthy, what makes them

sick, and what keeps them safe.

Can I still opt-out of things I don’t want to do? Yes, you can decide not to do some parts of the Study and still

continue to take part. At each visit, your data collector will

explain what we are doing and ask your permission. We will give

you a visit information sheet that describes everything that will

happen during the visit. If there are questions you do not want to

answer, you can skip them and still be in the Study. In addition to

answering questions and filling out forms, your data collector may

take your child’s body measurements like height, weight and

blood pressure. We may also ask for your permission to look at

your child’s health information and medical records. During some

visits, we may ask for your permission to collect blood, hair or

saliva, also called specimens, from your child.

Before data collectors ask for any specimens, they will explain

what is needed, how much, and how they will be collected. You

can always opt-out of things you do not want to do. We value your

continued participation in the Study, and we are only a phone call

or email away to answer any additional questions you may have.

What the Community and Participants Want to Know

(877) 749-0333

Community Inbox:

NCSSouthROCoperations@northwestern.edu

Participant Inbox:

NCSsouth@ncsoperations.org

www.nationalchildrensstudy.gov